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I Cannot Stand On My Feet. How Many Feel So Alone?

I Cannot Stand On My Feet. How Many Feel So Alone?

I cannot stand on my feet an longer than 15-20 minutes before they are absolutely killing me. My diagnosis are AS, Fibromyalgia, sjogrens, Raynauds, and neuropathy. I hear how people describe neuropathy as pins and needles but I don’t have that. I never know how to explain it but my feet just hurt and the longer I’m on them the more swollen and red and hot they become. I have to literally plan each day around my feet, meaning I have to decide what hideous shoes to wear for the day, to making… read more

A MySpondylitisTeam Member said:

You have described perfectly how my feet have been for over 40 years! I started with a burning sensation in the ball of my feet if I wore high heels at 17/18, which went away if I wore my Scholls (remember those?!) for a day or so. Then as I grew older my entire sole would burn like hell at night, not painful to walk on like the ball of foot pain, but still there and my GP just shrugged, refusing to refer me, even though I had other symptoms, he said they weren't related and he had no idea what was causing it...so that was that! But, where mine differs is that they're not red and swollen. However, I know someone whose feet do swell and are red, my cousin's daughter and she was also diagnosed with Sjogrens about 5 years ago, a part of that is the Raynauds which affects the hands and feet, causing symptoms as you describe, so not caused by the neuropathy, but the Sjogrens and Raynauds. Your doctor should be able to refer you for special socks and gloves, as well as treatments which will help to ease the pain.
As for feeling alone, not really, even though like you I have a small family, just me, my daughters, one son-in-law, a grandson and an estranged brother, but I do have an excellent friends support work and adopted family. I don't however, get invited to much these days because I either don't feel that I can go and end up cancelling plans or have to leave early due to pain. Those who know me well understand and anyone else can just go jump as far as I'm concerned.
Could work cut your hours or could you work from home on so many days a week? Job share maybe? A friend of ours we class as family has Ankylosing Spondylitis (she was diagnosed at 11 and is now 34) and her employers have accommodated her by arranging job share and she works three days 9-5. I know it's hard to motivate yourself when you're in pain and exhausted, but don't let it affect your relationship with your husband. On days where he wants to do something, explain that you need a power nap or a 10 minute break where you sit and maybe meditate, relaxing and deep breathing, then agree to go armed with painkillers and anything to help ease the pain. I know it's like giving in, but how about a mobility scooter? I finally admitted that I couldn't do walking around anymore and have now begun to look into getting one. If it helps to get you out of the house, why not?

posted almost 2 years ago
A MySpondylitisTeam Member said:

Ice packs. I have neuropathy and get numbness, tingling, burning, shooting, stabbing pain and just plain deep ache and when the burning pain gets to be too much, I set two bags of ice on the floor and put my feet on them.

posted almost 2 years ago
A MySpondylitisTeam Member said:

Similar problems here especially the neuropathy caused by back issues? Off balance & back pain. Try to do as much as possible, you have to push. I grab my cane & go, I always feel better once I'm out. I sit a lot but keep going. Don't give up!

posted almost 2 years ago
A MySpondylitisTeam Member said:

I have Venuous Insifiecency often misdiagnosed as something else swollen(fluid retention) 70 lbs give or take. Skin thinning on legs feet I sometimes where shoes 2x larger because they don't fit in my size. I'm swollen everywhere. Skin reddish brown but always red. Legs feet hurt 24 7. It's painful chronic and Drs won't give meds for pain just water pills. It's similar to varicous veins but they do little for me. Blood goes down but has prob getting back up to heart..

posted almost 2 years ago
A MySpondylitisTeam Member said:

All I can do anymore is walk. I started out struggling to do an 1/8 mile and that was with back and neck brace on. Every day I got a little further. When I got past the 10000 steps my weight started coming off. I know they say 10000 steps is not needed but it is magic number for me. Was I not in pain when walk , no I was in miserable pain carried a cane (sometimes two) to wait through the pain. Why do it well I was in tons of pain sitting in my chair. Am I out of pain after getting my BMI into acceptable levels? No still have pain but it’s much less and I am strong enough to ‘ walk off the pain’ on some of the occasions. I was luck to live in the desert where the heat and everything being flat helped. One step at a time.

posted almost 2 years ago
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